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  • #465738
    Dunlop321
    Participant

    Hi
    I had been on minocycline since jan 2014. Unfortunately slowly since autumn 2018 its effectiveness wore off, before my Rheumy took me off it in January 2020 and then steroids for a few months. Now I’m ready to start Humira.

    What is your experience of this drug if you have used it. Is their any hope for going on minocycline a second time?

    I cannot contact the doctor they originally put me on this protocol. She was at the Exclir clinic in London, but that closed suddenly so dunno where to contact her.

    Stay safe all.

    #465741
    Linda L
    Participant

    I was on Humira. It decreases your immune system rapidly. It is a strong chemotherapy.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #465744
    Maz
    Keymaster

    Hi Dunlop,

    Being on a biologic med doesn’t preclude use of AP, so both can be used concomitantly, provided that there are no unique issues for the individual.Some start AP after being on other meds for a while and want to eventually revert to the safer med, but tapering is usually essential.

    Any thoughts on why AP stopped working for you? Generic dud perhaps? Did you get checked for drug-induced lupus? Were you able to try other antibiotic protocols? Was Dr. E’s clinic not an option for you?

    #465902
    Dunlop321
    Participant

    Hi Maz,

    Sorry for my delay. I did not realise that one could take a biologic and AP. I do think I need something to support Humeria, but don’t want that to me methotrexate.

    I’m not 100% sure why it stopped working, but I know I was lax taking my meds during Summer 2018. Maybe this gave the disease time to re-establish. However I went back on the mino and things eventually settled down for a few months before flaring again. Maybe it is no longer effective for me, I don’t know.

    As for Lupus, I’ve had multiple blood tests but it wasn’t mentioned.

    DR E’s clinic. I’m not sure who this doctor is, however I cannot get in contact with my old AP doctor (Dr P, from UK). I’m in Ireland now and not aware of anybody here who offers this protocol.

    I must re-read that AP book to refresh on other antibiotic protocols.

    Thanks and I hope you are keeping well?

    Paul

    #465903
    Maz
    Keymaster

    Hi Paul,

    There is an AP Doctor in Carrigaline, Co. Cork. I’ll send you the contact info in a PM (private message) in case you can get there.

    Yes, no reason Minocycline can’t be used with Humira, as described by the rheumy who ran the MIRA trials, Dr. David Trentham. He says in his article that sometimes combing the two eventually allows the patient to eventually stop other meds and just use Mino. No doubt it would require careful tapering but it has been done.

    Article by David E. Trentham, M.D., “Antibiotic Therapy for Rheumatic Disease. You know where we have been; so where are we now?

    Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.

    Paul, I noted your About Me that is visible in your profile where you mentioned you came off enbrel in 2016 and gradually reduced your Minocycline from 5 per week to 2. Is it possible that this mino dosage reduction led to your relapse?

    #465909
    Dunlop321
    Participant

    Hi Maz,

    That is very possible that the reduction in Mino led to my relapse. I came off enbrel over a 6 month period (advice from Dr S) after being on it for 7 years.

    Thanks for the contact details, I will check that out. I will also ask my Rheumy about it at my next apt. She was supportive of taking minocyclene given the good results, she does believe it is an old fashioned drug, and that biologics are a lot better at treats the sympthons. Hopefully she will support me talking it along with Humeria for a while.

    #465910
    Maz
    Keymaster

    Good luck with your rheumy, Paul, and hope you got the PM with info for AP doc in Ireland.

    Interestingly, a new RA/mino study (2019) just got posted in the RA Research section of the site that recommends docs reconsider using Minocycline as a first line DMARD for both its immune-modulating effects and anti-microbial effects. Also, methotrexate has been used for RA for about 2 decades longer than Minocycline, so the “old-fashioned” description probably fits that DMARD, too! It’s the first study under the introductory commentary at the following link.

    Minocycline/Doxycycline/Tetracycline Rheumatoid Arthritis Research

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